A LONG POST

This is indeed a long post so feel free to skim or just know that I am OK or read it all.

Over the past two months I have written this post many times on the computer and in my head mostly but worried that I would be guilty of whining now that the pain is managed. I wrote a lot about a horrible ER hospitalization that is over but remains in my memory still with intensity. Again my guilty fear of whining has got in the way. So I wrote in my journal while mulling everything over. and not sending. Now I recognize that my slow recovery while back on chemotherapy has taken such a toll that mentally my recovery is perhaps even worse. Over a month ago while two of my oldest and best friends were visiting I fell apart saying I was done and felt I could not do this anymore. I also texted two other close friends basically saying the thing. I wanted to just give up. But I guess I was in such bad shape that I made decisions that were crazy. That piled on more shame and guilt. What the fuck. This is year 8 of cancer and I have endured much but I have never felt that low physically, mentally and emotionally.

A couple of weeks have now gone by and maybe tonight is the time for posting. It is November 29 and I went to 3 appointments this afternoon. The first was to have my port de-accessed. I have it accessed for bloodwork the day before chemotherapy and it is left accessed for chemo. My bloodwork has been tanking for weeks and this week it was worse. Hemoglobin below 80 means transfusion time and mine has been going down steadily, this time 79. So when I saw that yesterday I was surprised chemo would go ahead. I asked for a doctor's opinion and a GP showed up explaining that the protocol for Gemcitabine allows for low blood counts. When she did agree that I would likely need a transfusion next week that was it for me. No more chemo and especially because this was the last one for now anyway. I came home but we forgot about de-accessing my port thus the first appointment today. After that I walked to another building and had my embedded pain pump filled. The last event of the day was an annual eye exam. Good news there~~not much change after 3 years of big changes, probably due to treatment.

Ending chemotherapy should be celebratory news but I am so exhausted that I am not there yet. With my pain pump working and the end of chemo I do look forward to a slow recovery physically with hopes also that my glass half full attitude will return. For now, I admit that I am thankful that my cancer appears to be stable. Please know that I am not fighting breast cancer, nor should you see me as inspirational~~most us are simply enduring what we have to, until we cannot. The words of battling or fighting cancer are nonsense. What happens when we die? Were we failures because we dis not fight hard enough, try hard enough? I also dislike the word survivor. Those of us with breast cancer whether Stage 1, 2, 3 or 4 are not survivors. There is no cure for breast cancer. There is hope. Hope that some day the research will find out how breast cancer starts and evolves. Hope that we can get the most out of what life we have left. Hope for no pain and for many other things. Once I recover from the toll the past several months have had on me, maybe I will be able to get involved in the need for more funds for research and more care for those in need, rather than cuts all across Canada. 

The following was written awhile ago.


When I was discharged from Hospice about 10 days after the final surgery I felt there was something not quite right about it. But the doctor and staff felt that I was ready so I agreed and walked over to the pain clinic to have my pain pump checked and later that afternoon I returned for chemo. Wrong decision. I felt really sick. I realized then that I should have stayed at least another night in hospice. The next morning I returned to the pain clinic to have the remaining staples removed from my surgical sites. My doctor walked in just as the staples came out but also just in time to hand me a garbage bin for my projectile vomiting. No one seemed to be concerned and chemo was blamed. I vomited all the way home and my biggest sadness then was that no matter how hard I tried, I could not get out of bed to go to my monthly support at the cancer agency. I went the next week to my usual appointments and had chemo #2 on the Thursday. Again, I felt nauseated and the next day the vague headache I had had since even hospice got really bad and unless I lay down without turning my head it was from my point of view, really scary. I missed another important event, a major worldwide climate strike as there was zero chance of attending. I did call the pain clinic and the cancer agency, knowing the weekend was upon us. Everyone said to go to ER if I felt worse.

By Saturday my headache was worse and nausea and non stop vomiting started. I could hardly bear the idea of moving from bed into the car and it took Dick a long time to convince me. In my nightgown and slippers we made it to ER where I lay on hard chairs except for the brief procedural steps. I was admitted eventually and I felt like I was in a nightmare. Bright lights, so much noise and I was still vomiting. A few hours later I had a brain CT which seemed to the doctors to be a major subdural hematoma. Back to CT for a spinal CT and it turned out instead to be a major cerebrospinal leak or leaks. It was not until Monday that my doctor appeared to tell me the treatment. A blood patch which entailed drawing about 10cc of my own blood and injecting it into my spine was the answer. The next issue was that I needed to wait until Wednesday for the cryoscopic x-ray machine to be available along with the doctor who could free up 15 minutes of his assigned time that morning.

The nightmare continued as I was still in ER, granted that by then I was in a quieter area. I was delirious at times and needed a blood transfusion. Late Tuesday I got a bed and felt as though I had been moved to a 5-star hotel. Wednesday the blood patch was done in a sterile mini OR and within 10 minutes the injected blood into my spine found the leak and sealed it~~voila, the headache was gone along with the nausea. So, another hospital story~~many thousands of dollars spent keeping me in ER 3 nights and then another 2 nights in a private room for a 15 minute procedure. I have been hospitalized many times over the years but never felt so hopeless and ill. 

SUMMER TO FALL

August 12th was when I was admitted to hospice and it is now September 16th. I missed half of summer and probably the best part of it. However, there is no going back and I am so happy to have this amazing chance to get back to a more normal life, strange as it is to have a foreign device embedded in my abdomen.

The plan this week is to get me home. The representative from Medtronic who makes these pumps is coming over from Vancouver and I will learn how to operate the remote control device which is connected wirelessly to an iPad for dosage directions and more. My only involvement will be to learn how to add boluses (breakthroughs for more painful episodes) which will be predetermined along with the daily dosage by the doctor and nurses at the pain clinic. The system is set up so that I cannot “hack” into the pump for unlimited boluses.

Now that pain and the delivery system to reduce it has been “installed,” we are back to considering how to best deal with the cancer that is causing the pain. My oncologist was in to visit last week and the plan is to restart chemotherapy on Thursday which is also the probable day I will go home. I will continue with IV Gemcitabine weekly for 3 weeks with a week off and so long as tolerable this cycle will be repeated. A PET scan has been ordered as we still want to try to find out if possible, what happened to cause the major pain flare-up. Since the most recent CT scan and MRI did not appear to show any progression I hope that the PET scan either aligns with the other tests or does give us some indication of what is going on.

Meanwhile I look forward to getting back to a life with less pain with a goal of forgetting it exists for a few minutes then half an hour and so on. My daughter made a comment this weekend inferring that it would be good if I could get to the point where pain did not interrupt activities including social interaction.  That may not have been exactly what she said or meant but I took it mean that I could go back to being a “normal” person rather than being consumed by pain. What a great concept! With the federal election around the corner, one of the first normal (for me) things I can do is volunteer for either one of the Victoria candidates or Dogwood. All I have to do is get home and decide what I can manage with my somewhat weakened body along with a mind that is being weaned off systemic narcotics. 😊

I may have mentioned earlier that Suzanne gave me a Kobo just as I was being admitted 5 weeks ago.   From reading one book every few months, I have read half a dozen or more and managed to withdraw three more books from the Vancouver Public Library last night. The reason I almost stopped reading was because I had to put my book down every time I needed to turn the page and that became way too tiring. Much as I love real books, being able to hold the Kobo and turn pages with the same hand has been a wonderful gift. Mary encouraged me with her help to try quilting again. We actually started the process but it was at the time that pain was ramping up and it was impossible. Maybe now though I can try again. I doubt I could walk more than a block now but starting from that point will be yet another challenge. Dick will walk with me, Mary will take time to work with me to get back to the baby quilt we started and maybe I will get a few voters out to the polls October 21st.

I will be home when I write the next post.

POST OP FUN

I have been in the Victoria hospice nearly three weeks now. While laying around in a $10,000 exceptionally comfortable air bed with nary a chore to do may sound good, I am finding it a tad boring. While lying in said bed, in the last post I explained the first week was for new narcotics and old to come and go or increase or decrease all the while nurses and doctors carefully watching for any changes, given the very high doses of narcotics I had been on. Much has happened since then.

My 4th room and finally a single

One week after admission I had my first surgery. Done under a spinal anesthetic, a catheter was inserted into the intrathecal space surrounding the spine. The worst part for me was getting comfortable on my stomach given all pain I had, not to mention the bony parts from my original mastectomy and subsequent breast surgeries. Some twilight sedation fixed that and an hour and a half later I was shifted from the OR table while being told to cough and breathe deeply as my blood pressure was 62/26.  Any movement caused serious pain but surgical pain goes away, quite different than the other neuropathic pain. In any case, within a few days I was up and about other than the alarm of a leak which turned out to be mechanical rather than cerebrospinal fluid. It was easily fixed though it did delay my activity level which most of you know, is very hard for me~~I like to be active!l

September 3, 2019~~less than a week until the Stage II surgery. There has been progress for sure and my doctor continues to fiddle around with my meds in hopes to get it right. I have been home several times on passes for a few hours at a time. No overnight passes with an external intrathecal pump and to be honest I feel well taken care of here. The burning and throbbing in my hand continues when I am up due to circulation but it is so much better. All I can think of is that my hand is the farthest for the medication to reach. 


I do feel honoured to be here in the Victoria Hospice. I know most hospices do not have acute beds for pain management so that is one big thank you. I was so lucky when I was here just over a year ago for pain management but also to have met a doctor who had taken an interest in my case. He is an anesthetist first but also runs the Royal Jubilee Pain Clinic where he does several kinds of pain interventions. He did the stellate ganglion nerve blocks I had over several months but at best they are not long lasting. Frequently he and his team do simple epidurals and temporary intrathecal blocks  to relieve pain for those in end of life situations. They have not done a permanent intrathecal insertion with an embedded pump for nearly three years. Apparently it is costly and when my doctor first discussed the option, he said approval was needed~~not sure how high up, but it was approved so once I was admitted this time, he got the ball rolling and here I am. It was also explained by the doctor in charge of hospice, that I am simply a good candidate. I have chronic excruciating pain caused by a cancerous tumour but also have the expectation of "long" life expectancy given the slow growing cancer. He actually wrote something similar in his notes from last year. I try not to get my expectations too high but know that I am lucky already and to have a decent chance of pain relief if this works, is significant. There are certainly possible side effects, even so far as paralysis but we agreed that living with constant immobilizing pain is not an option. 

September 5th~~Wow, super annoying as yesterday I updated this post with photos but was  interrupted and unfortunately lost it all because I guess I forgot to save. F**K! 

I do want to describe what happened on my first pass shortly after that first surgery. I had wanted to go home for a pizza party with the family as all the kids were home. Andy had flown in from the north for a few days, Steven and Heidi were back home from Steven's year at the U of Nanaimo and Mary and her partner David were also around though it was their last night before heading east for a holiday.

Anyway I got my pass literally hours before this little pizza dinner and arrived home with my intrathecal IV via the external pump, a central port line and a couple of subcutaneous lines. I was dressed in hospital clothes not knowing what was coming. I noticed a couple we know on the deck as I came through the garage on to the deck but thought they had come for a drink. However as I walked into the kitchen I was so surprised to find a house full of friends and family there. It was my first ever surprise party and Dick did an amazing job considering that he had organized it long before I was in hospice. Every time I turned around I saw someone else. Friends from Victoria old and new, good friends from Vancouver who made the trip by ferry, Patti and Lyle by seaplane, Chris Worsley from Seattle and more. Mary's best friend Kath was there with 3 week old baby George and her husband Alan. Chris came on my 2014 Annapurna Base Camp trek along with his two sons Alan and Andrew. Kath was also there but did know the Worsleys. I love it that 5 years later Kath and Alan who met on the trek are now married and have a baby, making 3 generations there at the party. 

I almost forgot to mention the two orcas Lyle spotted in the bay. They breached and ate for as long as we watched them. What an addition to an already special night though we could not get a photo.

Heidi, Steven and Andy at the top with Mary and David in front

Elaine making sushi as always

Patti, Joanne and Bev

View of Gonzales Bay that evening

Mary, David, Kath with sleepy George and Alan

Chris, me and Suzanne

Baby George

PAIN

My last post was mainly about my uncontrolled neuropathic pain and where it had got me. It got me into hospice to start with. However I am not sure that I really emphasized how bad the pain was to get to that point. It had steadily been increasing for weeks but the last week was especially bad. By the end I would wake in what I call the dark and scary hours and kind of murmur to myself about giving up and going to ER. It is hard to mobilize when in pain so I just took my Hydromorphone every hour~~the 2-3 tablets prescribed and wait in hopes the throbbing, burning pain would stop. Usually 3 or 4 hours later I would fall asleep for a few hours only to wake up wondering if it would hurt if I got up. Yes would be the answer and just using the bathroom and brushing my teeth would start the whole cycle off again and back to bed I would go. I did manage to stay up long enough each day by late afternoon to play "Ticket to Ride" with Wayne, Anne and Dick, though few times I would have to lie on the couch for a few minutes to push the pain back. Every once in awhile I would actually feel quite normal and then would think that I had been imagining all the hours of lying down, taking my meds and hoping for relief. One highlight was managing to stay up long enough to teach Dick how to make Elaine's grandmother's biscuits. 

But Monday morning when the phone call from hospice came, so did relief come with it. The end game for admission this time was to get me a bed so that I could be guaranteed  surgery as soon as possible. However the immediate goal on admission was pain management. I had this neat little yellow contraption embedded in my upper arm that subcutaneously allows narcotics to be pumped in all by myself~~well there is an hourly limit! The Hydromorphone was infused through the pump into my arm via the little yellow butterfly thing.  Methadone in a higher dosage was given orally as normal plus a new one was added~~Ketamine. Ketamine I was told by doctor, was at one time a battleground drug, because it is easily given as an oral liquid that works quickly. I have also learned that it has been used as a veterinary tranquilizer, an anesthetic and also as a recreational drug. For me, this addition to my arsenal seemed to make all the difference and by Thursday things had really turned around. I could actually get up and do simple things like brush my teeth, wash my face and even walk to the end of the hall without that burning, shooting, electric pain that brought me here.

Back to the aforementioned surgery~~ it is scheduled for 0800 Monday morning. The procedure is the temporary insertion of an intrathecal catheter with an external pump. The  catheter will be threaded up the spine to the axillary area where medications will be infused from the eternal pump.  Following surgery I will be monitored for a few days to ensure that the  system works. 

Apparently this is Stage I. The next step if all goes well, will be back to the OR for the insertion of a catheter but with an implantable pump. Sounds like fun don’t you think? It will be done with a spinal anesthetic so I can let them know if there is unexpected pain as the catheter is placed. 

For now, I am laying around napping, doing the odd Sudoko, and reading books on the brand new Kobo Suzanne got me. She also added several books and got it linked with the library. Mary picked it up from her in Vancouver and I got it Sunday night~~perfect timing for my admission the next day. She knew I would love it as holding books had become so difficult I had virtually given up reading. After each page I had to put the book down to turn the the page, not to mention how hard it was just to hold the book in one hand. I read a whole book on my Kobo in the first 3 days here.

Dick has gone off today with Mary and David for on an overnighter on VK. I was supposed to with them but it is clear why I am not. I am just happy that they have this opportunity now.

Sunset from Van Kedisi in July

SUMMER UPDATE 2019

It has been my intention to post here for a couple of weeks~~in fact since the anniversary of my first diagnosis July 27th. The metastatic cancer anniversary is coming up later this month.

But things have changed so fast that every time I have started, either I have been in too much pain or I have not had the energy. July 19th (Dick’s birthday) we went sailing with Elaine and Suzanne and I am so thankful we did because I have not been out since. This week our friends Anne and Wayne came from Calgary to visit and sail with us for part of that time. When we made those plans I was able,  but just before they came I had to tell Anne that we might have to cancel the Van Kedisi part. Even up to Wednesday night I was protesting that we could manage. But we are glad they came nevertheless.  Dick got to cycle out to Sooke with Wayne while Anne and I hung out here. The three of them have cooked wonderful meals and this morning I  managed to teach Dick how to make Elaine’s grandmother’s baking powder biscuits for breakfast. It was a great break for Dick too.

I am now number #1 on the list for the Victoria Hospice. The pain has increased day by  day and my medications both routine and for breakthrough have gone up at the same time to the point that I have only been out twice all week, once for blood work and the other for chemotherapy. I started a new chemo drug on Thursday as my oncologist feels that Paclitaxel is no longer working plus side effects like tinnitus and neuropathy have crept in. 

So the pain is bad, but hopefully a surgical intervention will stop the pain even though though there are possible side effects. It is neuropathic pain caused by the tumour in my axillary area that is wrapped around the neurovascular bundle of the brachial plexus. Sometimes the burning, throbbing pain radiates from my scapula and and often goes right down my arm to my fingertips. That is happening right now and the fingertips feel as though electric currents are firing out. My recent scans showed nothing amiss but something is happening to create the pain. 

I am happy to say that I have won 2/4 games of Ticket to Ride while taking  Methadone on a regular basis along with frequent Hydromorphone for breakthrough pain so it seems that my brain is still functioning. Anne dislikes Settlers of Catan which is just as well as that game just may be beyond me at this point. 

Anne and Wayne leave this afternoon so Dick will be back to full time work here. Trust me, this is not easy for him with the changes hitting us so quickly. Nevertheless, this is not life threatening as my tumour is considered local or regional so far. Not to minimize the lack of use of my right hand and the debilitating pain but if the surgical intervention we are looking at is successful, then the pain may be eliminated. As my cancer agency pain doctor said a week ago, losing some more mobility is probably better than having to lay around most of the time. I agree. Despite knowing it s not my fault, I feel so useless.

Monday, August 12 update. I have been admitted one of what they call acute beds in the Victoria Hospice. There are 7 acute/respite beds here and 10 beds for those approaching death. I was here last spring for pain management too but this time the pain is far more severe.I will keep on a more regular basis but I already feel better in hopes that we will see progress sooner than later.

Also, Mary arrived last night and will be with us, working and visiting until she and her partner David head east to visit his relatives for a short visit. They both return after labour day to head back to Uvic. Before they leave Steven and partner Heidi move back from Nanaimo where Steven has just completed a university program. Andy who lives in Terrace where he finished his BASc in Nursing in May SUMMER UPDATE 2019is flying in on August 22 for a week. It is not often to have all 3 kids here in Victoria at the same time so I look forward that. Maybe I will even be home by then.

This photo was taken July 20th

LIFE IS PRETTY GOOD

Much thought goes into the beginning of a blog post for me and it usually there has been a reason for reasons for me to want to speak up. In the 7+ years since my first breast cancer diagnosis the roller coaster analogy is never ending though the ups and downs do have those plateaus where you catch your breath or the ride comes to and end. Unlike the roller coaster, once we are faced with metastatic cancer, stage IV or simply cancer that will never be cured, it is difficult to banish thoughts of what's next or how long do I have along with facing the necessary details like wills and end of life plans. Of course we all have to face these things but somehow having metastatic cancer can make it more imminent.

Back to the purpose here. Christmas came and went and was wonderful. Soon after everyone returned to school I fell back into a trap that happens once in a while. When this happens I find myself wanting to know more about my stupid tumour or the blob as I often refer it as. No matter how unreal it is, I want to think that there must be some way to attack and release the tumour. In early January I saw my family doctor who was sympathetic and sent me off to a plastic surgeon that I had seen before. But of course she said again that there is nothing that can be done. She had sent me last year to the best team in terms of surgery but once they saw the scans they said it was hopeless. I guess I buried it in my mind and had to hear it one more time. I cried a few tears, went home and called M.D. Anderson in Houston, Texas one of the two preeminent cancer centres in North America. After several telephone calls I was sent a package. If I wanted to have my case looked at by an assessment team I needed to send every single scan from the beginning plus just about every document also from the beginning. The cost of the team looking at my case would be US$16,000 to 32,000. We had called our insurance company and they would have paid for the second opinion. It only took me about 24 hours to think it through and know that it was really not worthwhile. The plastic surgeon also gave me names of two doctors in North America one in Toronto and the other in St. Louis who do brachial plexus surgery. I have pondered making phone calls but the reality is that no one will touch a tumour  entangled around the neurovascular bundle of the brachial plexus. Chances would be good for bleeding to death or losing all control of my arm. My oncologist says it is very common for patients to go back every once in a while try and find a way to make it all better.

Once I got over those few days in January my positive self emerged and I started yoga, exercise and meditation classes at Inspire Health again and decided to get some counselling. It is helping.

Here is a little excerpt from my journal which I planned to add to this post.

Sunday March 3, 2:17 PM lying in bed feeling very weak and suddenly a bit afraid. This is going into a  blog post but I will try to encapsulate my feelings around my health and how it has been for the last couple of weeks. The brachial plexus infusion which was nine days ago has done nothing in my estimation. I am feeling more pain now. Scary again.

So what are the things that are of concern with my metastatic breast cancer right now?

Continuing pain which is manageable as always with narcotics. So not a big deal? Yes or no? It depends on the situation and the timing.

Mental status. This one goes up and down and sometimes on an hourly basis or worse. But also it can be brought it on after several months of seeming normalcy.

Activity level. This one is very difficult to describe. I am sick right now well into week 2 on a cold and cough very productive with green phlegm. I feel as weak as I have ever felt well maybe not as weak as when I needed blood transfusions. But this is a weakness that I do not like but am getting used to at this point I guess.

Scaredy-cat level is at one of the more highs than usual.

March 9th, 2019. I had an MRI last Saturday night and I had a CT scan Tuesday morning along with the usual bloodwork and then chemotherapy on Thursday morning, the third Thursday in a row. Along with Paclitaxel I get Dexamethasone which is a steroid to ward off any allergic affects of the chemo drug. Mary was in a session called "Tremendous Trees" that was part of Ideafest at UVic this week and one of the things she learned is that Taxol drugs (Paclitaxel being one of the Taxols) originally came from the yew tree. That was kind of a fun trivia fact I was aware of, having had Taxol back in 2012 but it was interesting that she learned about it from a session on tree research. Hey this is one of the positives of having breast cancer~~ we learn a lot. I must add that allergic reactions come from the fillers used, not the Taxols themselves.

Back to chemo day. Then I get Benadryl, another allergenic drug along with Ranitidine in case of nausea. The dexamethasone and the Benadryl fight each other so I feel wired but tired. Usually I come home feeling a bit weird but also energetic. This week not long after chemotherapy I decided to do some pruning in the garden after Dick and I had gone for a walk. I pruned my way up to the road and tried to get up from a sitting position. However with only one arm/hand working and weak legs I managed to throw myself onto the roadway. Tripping and falling have become quite common no doubt due to medications, chemotherapy and stupidity on my part. Icing, Ibuprofen and bedrest seemed to do the trick and gave me time to work on fundraising for today's event.

That was Thursday afternoon and today as many of you know I walked 5 km with my special little team called "Breast Cancer Eh?" Dick, our daughter Mary and her partner David joined me on Inspire Health's major fundraiser of the year. Inspire Health provides cancer patients many resources such as counselling, yoga, individual exercise routines, nutrition planning and more. All of this is free with money coming from a grant and this big fundraiser today.

It was only Wednesday while lying in bed that I decided to form a team and get the word out to my friends all over the world. The response was heartwarming. Today was a beautiful day in Victoria, relatively warm (6C) with no wind and I actually managed to walk the 5K, something I did not think I could do. I have to throw in the fact that we came 5th in team donations.

I have left the best for last. My oncologist phoned late yesterday afternoon with good news. Both the MRI and a CT scan appear to show stability with no signs of progression.

Maybe there is another trek in me yet but I have a long way to go on strength and balance. For sure I am feeling positive.

Love to you all,

Marian

  

Relaxing on Dean and Marie's catamaran in the Bahamas in February.

Dick, me, Mary, David and Franny the pug today at the end of the inspire Health 5K walk.